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Living with Idiopathic Hypersomnia – Narcolepsy

Imagine this 7 – 10 years of regular dr visits, specialist appointments, many scans, scary ambulance rides and far too many blood tests. Every appointment or visit ending with something along the lines of “you are quite the mystery, sorry we can’t help you, we have no idea what is going on with you, you should see a psychiatrist”. I think I have nightmares of those words replaying in my head over and over again! Nothing is scarier than the unknown…. you begin to second guess yourself and start to question if you are in fact going crazy.

I remember as a kid watching these documentaries and shows about medical mysteries and how it took literally forever to figure out what was going on with these people. I remember always being afraid it would happen to me! Little did I know that it really would…….

Approximately 7-8 years later I have received my diagnosis of “Idiopathic Hypersomnia leading towards Narcolepsy. Ever heard about it before? I know I haven’t! Reason being is that these conditions are pretty rare or under diagnosed because of the process of ruling out everything else and the waiting between appointments takes forever to the point that people give up!

What are these conditions? And how do they affect my every day life? Well they are a sleep disorder caused by the malfunction of the central nervous system and a lack of hypocretin in the brain. These conditions mess up your sleep and wake cycle, making staying awake a daunting challenge, which is often times impossible. I maintain a pretty regular bedtime between 9:30 and 10:00 pm. The whole night is filled with the craziest nightmares that you can imagine….. They feel so real that I often wake up crying and drenched in sweat. Lots of times I wake up not even knowing where I am or why I’m there and quickly close my eyes before I panic. The mornings are my toughest challenge….. I can’t even explain the absolute exhaustion and extreme fatigue that is plaguing my lifeless body. I usually have to sleep in until at least 10:30 to be able to somewhat function like a normal human being without being a complete disaster to say the least.

You would think over 12 hours of sleep would be sufficient! I bet you are all thinking wow if only I could only sleep that much, I could take over the world. Not so much……. Every hour is a struggle to keep my eyes open. “I’m tired” is my absolute favourite saying and my bed is my best friend. My afternoons I usually always have to take a two – four hour nap….. (which are also filled with crazy nightmares) I wake up feeling a little bit better but have to motivate myself to get going and get a few things done because the limited amounts of time that I have left in the day. Imagine not sleeping for 72 hours and your ability to function. Well this is a reality for those with this condition every single day of their lives. (Okay we do have some good days, and on those days we shove so many things into our schedule until we physically collapse). Our brains always feel slower, memory isn’t as sharp as it should be and being clumsy is just a norm for us. This condition also plagued me with anxiety as that is the same part of the brain that this condition stems from and the fact that you never have a rejuvenated sleep. How can your brain repair when you aren’t getting the sufficient quality of sleep that you need.

Have I always been this way? Not at all, in fact I was the complete opposite and I think that’s what makes this whole situation that much more frustrating. I was always a work-a-Holic. Pushing myself to be the best I could be. I was always the last to go to bed and the first to wake up! Two hours at the gym never phased me and was just a part of my daily routine. The amount of energy that I had was actually insane… I was always told to take a breather but I didn’t know how to relax. Well when you are forced to relax because your body won’t let you do anything else it’s a whole other story.

I think the most difficult part of this whole journey is fighting with my brain and thoughts and thinking about how life should be and what I should be accomplishing or have already accomplished. I don’t want people to see me as being lazy or that I’ve lost my motivation….. because that is so far from the truth. I have my days that I will reflect and get upset on how this condition is interfering with not only my life but those that I love. It’s embarrassing at times running into people that you haven’t seen in a long time and having to answer the dreadful question so what do you do? Where are you living? Etc etc. My brain is always full of so many ideas and ambitions but I do have to be realistic with myself and what I can manage.

This is going to sound crazy but there can also be benefits to living with a condition such as these. (This is also because I always think in terms of the glass half full, and that there is always someone else that has it worse). You have no other choice but to think positive in these situations. It’s an every day battle, a battle that you can put to use and create a purpose with. The universe does not give you anything that you can’t handle. I’ve become so much more aware of how precious and short life can be. Every day I am so grateful to be alive and to have the opportunity of feeling the sun on my face, spending time with family, a walk through the park, all of the simple things that people tend to take for granted. Because I only have limited amounts of energy I’ve learnt how to spend it and who to spend it on. I don’t have time or the energy to deal with toxic relationships that aren’t good for me…… I’ve learnt that expressing my creativity is one of the most healing things that you can do, whether it’s writing a blog or decorating a room or planting a garden. Through all of these things I have found what I truly love to do and created a purpose for myself in life. I like to make things pretty and I absolutely love to share with the world anything and everything that I’ve learnt in these past 30 beautiful but challenging years on this planet. I’ve learnt that your body is your empire……. You need to put that above everything else! Your health is absolutely everything…. everything else comes second, so start treating it as a priority instead of an after the fact……. I’ve learnt how to have true meaningful relationships that I want to last for ever and that quality in friendships is way more important than quantity. It breaks my heart when I see relationships ending for such silly reasons. They are there to get you through the bad and celebrate the good with you. They are meant for you to grow and create a life that you will both find meaningful.

Learning that it is okay to have some moments where you feel sorry for yourself and let out a few tears, as long as you take that moment and use it as motivation to create purpose and happiness in your life. Don’t punish yourself for having a condition, celebrate yourself and the fact that you are the warrior in fighting an every day battle and becoming stronger and wiser every single day! Invest your time and energy on the things that you can do. Create some goals for yourself that you know are achievable with your circumstances and smash them. I’ve learnt that I don’t need to prove myself to anyone but myself. Fighting through this process and condition have shaped me to be the grateful and creative person that I am today. I am a fighter and with that becomes strength and with strength becomes anything that you want it to be. Everyone is fighting a battle that you may not know about so always be kind.

To anyone else dealing with these conditions trust me when I say this….. You are all amazing and incredible human beings with extra hidden superpowers that you wouldn’t know about without your condition. You have more strength than anyone knows and I believe in you and the fact that you can make your life a happy and purposeful one even with the given circumstances. The most important part is you aren’t alone.

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2 thoughts on “Living with Idiopathic Hypersomnia – Narcolepsy”

I get it!! Reading your words is like reading my own story! Well, almost – I’ve had issues with fatigue since I was 10, and spent 17 years trying to work out why. I have a parasomnia that is like night terrors but more extreme, and that has made it even harder to stay awake during the day; my MSLT revealed that my brain wakes up throughout the night, and that’s what triggers off these crazy nightmares. I’ve been diagnosed with hypersomnia, and probably have narcolepsy but the medication I take for my anxiety can affect the sleep test results, so it couldn’t be definitively diagnosed. I’ve just started my own blog about life with hypersomnia, to try and help people understand what it is and what it means to have this illness. It’s more than just being sleepy!

I really love your take on things, and your amazingly positive outlook. Also, you are a babe!! Loved reading your post 🙂

Awe I totally just seen this comment!!! Thanks for commenting! It’s so nice to be able to connect with someone going through the same thing! I have the craziest night terrors as well and wake up drenched in sweat! And yes this illness is way more than just being sleepy.. it’s hard for those to understand because we look normal on the outside other than my raccoon eyes that I try to desperately get rid of with make up 😂😂😂 oye the struggle is real. Thanks a lot for your sweet comments! I’ll have to check out your blog.